Voices: Florence Ndagire

Florence Ndagire is a PhD candidate at Makerere University

What is your current role working on disability and health?

I am working on access to maternal, sexual, and reproductive health rights for persons with disabilities in Uganda. Through my research, I am trying to establish whether health facilities, health services, and healthcare is accessible to persons with disabilities in Uganda.

In your opinion/experience, what are some of the main barriers for people with disabilities in accessing health? 

Barriers range from policy, attitudinal, and environmental to information access. Health policies, specially here in Uganda, have not been inclusive of persons with disabilities. There are no official guidelines for the provision of healthcare, for instance, in identifying needs of persons with disabilities and in ensuring an appropriate budget for the removal of barriers. Most people with disabilities have not received reasonable accommodations.

The cultural context in my country regards disability as a curse or a bad omen and it has many stereotypes and stigmas. Healthcare providers don’t want to treat people with disabilities, they see them as a problem. They ignore, shout, or say negative things about the kind of healthcare persons with disabilities are seeking, even when their health conditions have been explained to them. Another important challenge with health workers is their training curriculum. They have not learned about lived experiences of persons with disabilities or success stories. 

Healthcare facilities are inaccessible for people with physical disabilities and wheelchair users. They lack lifts, ramps, and rails. Inside the hospital, maternity beds and examination tables are inaccessible. Health information is not available in braille, large print, digital formats, plain language or easy-to-read formats. There are no sign language interpretation services to enable persons with hearing impairment to communicate with a health worker about the health conditions they have. I think all these barriers are coupled with the lack of a delivery strategy to ensure that the health policies are amended for persons with disabilities.

What should your Minister of Health know about these barriers? What should they do to address this issue?

Our Minister of Health should know that persons with disabilities have been left out of the health care system. We need to remove all the barriers associated with health care and first train all health workers in disability so they can recognize the different needs of persons with disabilities. Health workers should know that our individual needs require support and reasonable accommodation, and that comes with a budget requirement. When budget is available for disability, it should be compliant with the UN Convention on the Rights of Persons with Disabilities to make sure that persons with disabilities are catered for at all levels of health care. 

Further, the Minister of Health should know that sign language has been recognized as a language of communication and therefore sign language interpretation should be available at every hospital, to ensure that persons with hearing impairment will receive the adequate information. 

Finally, prescriptions should be available in accessible formats so that people with intellectual or psychosocial disability recognize the prescribed doses and take it appropriately.

If you could change one thing about health care for people with disabilities, what would it be?

Disability is central to health care, as most people with disability live on medications throughout their lifetime. Yet all is forgotten, when designing health programs. The one important thing we require is to make sure that the health care system involves persons with disabilities from the design, implementation, and monitoring and evaluation, and this is called universal health care. 

What are you hopeful about disability inclusion in health going forward?

I am hopeful that there will be strategies designed for all health centres to promote disability inclusion and all the unmet needs of people with disabilities will be addressed. People with disabilities will be consulted, asked for consent, and not given forced treatment, especially for people with psychosocial disability. 

What has COVID-19 shown and/or changed for disability inclusion in health?

COVID-19 has changed the healthcare landscape because governments had to find ways of addressing and preventing the pandemic.  

Persons with disabilities were negatively impacted. For example, the health centres for persons with psychosocial disabilities were transformed into COVID centres. These persons, who live on medication most of the time, were left out or feared getting in contact with COVID patients. As a result, most of them withdrew the psychotropic medicines, and this has caused severe disabilities. 

Overall, the guidance provided by the WHO was not time and context specific. They did not recognize the needs of persons with disabilities. Social distancing became physical distancing, even when people need a lot of support and care, especially those with visual impairment and people with physical disabilities. Even the people who have been supporting us were stigmatized, because carers need to sanitize wheelchairs and use their hands to support a person with disability. 

“I believe we became the forgotten group [...] the impact has been disproportionate, negative and to our most disadvantage”

I believe we became the forgotten group. The COVID-19 task forces and the humanitarian response measures care for every citizen, but persons with disabilities were forgotten. 

During the immunization process, disability was never prioritized as a condition or as a reason for vaccination in Uganda. Most people with disabilities have not been vaccinated. When testing for COVID-19, the statistics did not disaggregate data by disability, so it is not possible to know how many people with disability suffered from the disease, how many tested positive, and how many have died. I believe that the impact has been disproportionate, negative and to our most disadvantage.